Measuring health-related quality of life measures in children: lessons from a pilot study

Abstract

There is a debate in the health outcomes literature regarding who the most appropriate respondent is when assessing children’s health-related quality of life (HRQoL). In some cases, parent-proxy may be the only practical option where children are unable to self-complete an HRQoL questionnaire. However, children’s self-reported values may be preferable because HRQoL is subjective and represents the respondent own perception of health. We collected the youth version of the EQ-5D-3L as part of a feasibility study comparing psychoanalytic child psychotherapy with usual care for children aged 5-11 years with treatment resistant conduct disorders. The questionnaires were completed at baseline and 4-month follow-up by the child via face-to-face researcher administration, and by one parent as a proxy respondent. We present percentages of completion at each time-point and investigate the level of agreement between child and proxy-respondent on the child’s health. About two thirds of children (65.5%) were able to complete the EQ-5D-Y at baseline and 34.4% at follow-up. Children and primary carers were mostly concordant regarding overall child’s health. Parents reported more problems in ‘doing usual activities’ and ‘feeling worried, sad or unhappy’ and fewer problems with ‘pain’ and ‘looking after oneself’ than children did. The reports regarding ‘mobility’ were very similar between children and proxy-respondents. The assessment of quality of life by children using selfreport questionnaires is possible with the help of a face-to-face researcher, providing evidence that children should be asked to self-complete HRQoL questionnaires in trial studies.

Do Caregivers and Patients With Early-Onset Scoliosis Share the Same Perspective on Health-Related Quality of Life? A Comparison of 24-item Early-Onset Scoliosis Questionnaire and 22-item Scoliosis Research Society Questionnaire Scores

“…10,14,15 Discordance in mental health reporting is well demonstrated, particularly for older pediatric patients. 4,16,17 Matsumoto and colleagues showed a low level of agreement between patients aged 5 to 18 years with a variety of musculoskeletal Questionnaire. The patients reported a higher level of physical functioning and lower levels of general health and mental health.…”

“…Multiple studies have shown a strong correlation between patient and proxy reports for chronic pain conditions and postoperative pain, suggesting that pain is effectively communicated between patient and caregiver 10,14,15 . Discordance in mental health reporting is well demonstrated, particularly for older pediatric patients 4,16,17 . Matsumoto and colleagues showed a low level of agreement between patients aged 5 to 18 years with a variety of musculoskeletal conditions and parents in the Physical Function, General Health, and Mental Health domains of the Child Health Questionnaire.…”

Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis

“…The difference between agreement and correlation has been addressed in literature [ 19 ]. However, until recently, standalone correlation coefficients have been employed to assess agreement between child self and proxy report [ 75 ]. Correlation and agreement both measure the strength of association between two the variables of interest; however, the key difference is that agreement coefficients, in addition, account for the absolute agreement between the raters.…”

Special issue: <em>Research in child and adolescent psychotherapy</em>

“…Attention to the subjective perspective in the therapeutic process can provide important information for understanding the mechanisms of change in particularly vulnerable clinical populations such as children and adolescents who have been sexually abused (Capella et al ., 2022 ), but it can also foster change itself through child-therapist or parent-therapist relationship (Nunez et al ., 2022). Giving a voice to the child’s experience and the perception of his/her own well-being, as a verification of the effectiveness of the treatment, can be of great use especially in understanding how much parent and child are able to cooperate in achieving therapeutic goals starting from the understanding of suffering (Abraham, Edginton, Cottrell, & Tubeuf, 2022 ). At the same time it is important to have new models of intervention for children with emotional disorders that can reduce their suffering (Qanbari et al ., 2022) as well as using new methodologies in the training of child psychotherapists (Bate & Tsakas, 2022 ).…”